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  • Writer's pictureBret Koncak

Is 'Patient-Centered' enough for medically complex patients & families participating in clinical trials or new treatments?

Updated: May 16

Article based on mejo's 'Revolutionizing Support' presentation delivered at the 2024 World Orphan Drug Conference

Patient-centered care has long been a guiding principle in healthcare, promoting treatments and strategies that prioritize the patient’s needs, preferences, and values. This approach has shaped clinical trial designs to improve patient convenience by reducing site visits and streamlining consent processes. Similarly, pharmaceutical companies design new drug releases with patient education and guidance for compliance measures in mind. These changes are positive steps; they acknowledge the patient’s role and guide them through their responsibilities. However, for families managing complex medical conditions, this model often falls short.

The Limitations of Patient-Centered Models

Patient-centered strategies often prioritize streamlining research or marketing protocols over the actual daily lives of participants. For instance, a trial might reduce the number of necessary visits, but participants often need to invest significant effort in providing feedback and information from home. Similarly, while pharma companies might think that providing a patient portal—or often loads of pamphlets and a notebook and pen—is patient-centered, these methods for communicating and capturing information are outdated and cumbersome. These activities add more to the workload of patients and families instead of reducing it. Every additional task is a challenge when you're running near empty.

During my career, I fell into the same trap while taking a solution named 'Patient Flow' from napkin sketch to market at a prominent electronic medical records company. This solution was designed to efficiently coordinate patient movements within and throughout the hospital system, coordinating various departments, transporters, custodians, and equipment to streamline transfers and discharges. After release, we realized we had overlooked essential human elements, such as accounting for delays when the patient was not ready to move as the system indicated. They were in the bathroom, they wanted to be accompanied by other family members who hadn’t arrived yet or they still had belongings to gather up. Our system, though efficient on paper and intended for the patient, inadvertently treated patients more like objects to be moved on schedule rather than people with individual needs. We may have named it 'Patient Flow,' but by not fully incorporating the patient's perspective, we missed the mark.

The Imperative for Patient Empowerment

When we ask patients or caregivers to do more, do they see a substantial return on their time investment?

Empowering patients and their families extends beyond mere acknowledgment; it requires integrating their participation in new treatments or clinical trials into their broader health and care management. This emphasizes their pivotal role in care, granting them autonomy and essential tools. It recognizes their multitude of responsibilities, from coordinating with various care providers to managing extensive daily routines encompassing medication, diet, & hygiene to mountains of administrative work.

To achieve this, we must offer solutions that truly resonate with them—solutions that save them time, boost their confidence and readiness, and enhance their effectiveness in self-care and caregiving. Solutions above all must be simple and useful vs. complex and comprehensive. We need to ask , "When we ask patients or caregivers to do more, do they see a substantial return on their time invested in the activity?" These solutions should address multiple needs simultaneously, making a significant difference in their daily lives.

Solutions like mejo that empower patients have a meaningful impact

Three key strategies for providing solutions that promote Patient Empowerment:

  1. Multifunctional Platforms: Develop platforms that serve multiple functions beyond simple information gathering or knowledge sharing. These platforms should offer assistance with managing care, tracking events, organizing documentation, and facilitating communication with all parties involved in a patient's care, including family members, educational institutions, healthcare providers, and other caregivers.

  2. Customizable Technology Solutions: Technology solutions provided should be customizable to fit the unique needs of patients and their families. This customization allows patients to control the management and flow of their information, facilitating better coordination across their complex care landscapes, including with pharma companies and clinical researchers.

  3. Make it easy to provide feedback & understand adoption: Ensure your approach resonates with your community, fostering a mindset of ‘want to do’ rather than ‘have to do’. Involve patients not only in the trial or treatment planning, but also in discussions that encompass their broader health management. Capture adoption analytics to ensure that your tools and strategies yield positive outcomes not only for your trial or treatment, but also for the overall benefit and health of patients and their families.

Empowered Patients become Active Partners

When you meet patients and caregivers where they are and deliver tools that amplify the benefits to them, they gain the time, energy and enthusiasm needed to become an active partner. They fully utilize offerings to maximize benefits—and spread the word to others. Their narratives carry considerable influence.

Empowered patients and families become active partners

For clinical research groups, embracing patient empowerment means forging deeper connections with patients and their families. This not only leads to more engaged participants and better data collection, but also enhances the overall perception of the organization. Patients and families feel valued and respected, leading to a positive reputation for research activities.

Similarly, pharma organizations stand to gain from empowering patients. By offering solutions that prioritize patient needs and preferences, pharmaceutical companies can boost brand loyalty and trust. Patients who feel supported and empowered are more likely to adhere to treatment regimens and advocate for the organization's products. As a result, pharma companies can achieve better outcomes, drive innovation, and ultimately improve the lives of patients worldwide.

Delivering Greater Value for Everyone

By prioritizing solutions that truly empower patients and their families, we create a ripple effect that benefits everyone involved. Patients and families gain greater control over their health journey, and better support for daily caregiving leading to improved outcomes and quality of life. Clinical research groups and drug companies see increased engagement, better information collection, and more meaningful insights. When we transition from merely focusing on patients to genuinely empowering them, we set the stage for a system that is not only centered around patients but also driven by them, revolutionizing lives and delivering greater value for everyone.

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